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Feature Story

Sick and Tired

arol Sirot, 85, can’t remember a time when she wasn’t in pain. But it wasn’t until she was in her mid-70s that she found out why. “Finally, after years of going to different doctors, I got the diagnosis: chronic fatigue syndrome,” she says.

Suddenly, Sirot’s lifetime of suffering made sense. During her childhood in Port Chester, New York, she had suffered from painful bouts of muscle and joint pain that had been diagnosed then as fibromyalgia. As an adult she experienced frequent symptoms and illnesses, but one constant — debilitating fatigue.

Chronic fatigue syndrome is a complicated and often misunderstood disorder characterized by extreme physical and mental fatigue that lasts for more than six months. Most often it completely interrupts daily living; in fact, 25 percent of sufferers end up bedridden at some point. Usually, several other symptoms are present, from chronic pain to extreme insomnia. “Of the 20 or so common complaints, I have all of them but one,” says Sirot. “I’m grateful not to have the migraine headaches.”

While there is no cure for CFS, Sirot was relieved to get the diagnosis. “I was happy to have a name for it,” she says. “And happy that I could start taking action. I joined every support group I could find — at one point I was going to four of them — and I learned different ways to cope.”

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A generous gift

Carol Sirot asked that her gift add to the body of knowledge on chronic fatigue syndrome.

Sirot is dedicated to helping scores of other people deal with the devastation of CFS. Funds from a generous gift she recently made to the university will be used to raise awareness and understanding of CFS among Quinnipiac students, the public and medical professionals and to focus on improving both diagnosis and treatment. She also hopes the illness eventually will get more respect.

For many years, much of the medical establishment dismissed CFS as being psychologically based — or all in a patient’s head. Advocates believe this lack of respect corresponds to a noticeable lack of funding for CFS research. In 2015, the National Institutes of Health allocated $5.4 million for the study of CFS. In contrast, far fewer Americans have multiple sclerosis — approximately 400,000 — but the NIH doled out a whopping $103 million for the study of that disease.

While the Centers for Disease Control estimates that between 836,000 and 2.5 million Americans suffer from the syndrome, many of them go undiagnosed. There is no test to precisely detect CFS, and it is believed that most CFS patients see an average of 20 doctors before they find out what is ailing them.

Sirot, whose late husband, dermatologist Gustave Sirot, served on the Yale Medical School faculty, chose to give to Quinnipiac because the Frank H. Netter MD School of Medicine focuses on training primary care doctors. “Years ago, my family doctor didn’t believe that chronic fatigue existed. It’s so important that you have a physician who will take the time to listen to you,” says Sirot. “They can’t just give you five minutes. It all starts with your primary care doctor.”

Sirot’s gift supports the development of case studies where students work in interprofessional teams to diagnose and treat CFS. “This makes sense because athletic trainers, occupational therapists, physical therapists and social workers are the ones who will be working with the patients in the community, in their home and at their work, to help them learn to live successfully with this diagnosis,” says Kim Hartmann ’76, MHS ’82, professor of occupational therapy and director of the Center for Interprofessional Healthcare Education. “A lot of the work is in respecting the patients, in listening to their stories, and then helping them figure out strategies to manage the fatigue.”

A seminar held last October at the medical school brought together OT, PT, medical, nursing and social work students who discussed a particular case and how they could improve that patient’s quality of life. “I was shocked at the excitement,” says Hartmann. “Usually, we only get about 30 or 40 students for these case studies, but the room was packed — there were almost 130 students.”

Hartmann says most of the students have heard of CFS, but don’t really understand what it means. “Some students say they are so exhausted during finals that they have chronic fatigue. Then they meet somebody like Carol, who overexerts herself one day, and can’t recover or can’t get out of bed, for eight or nine days. Then maybe they understand that they are not using the term appropriately.”

Aaron Bernard, MD, the assistant dean for simulation at the medical school, runs the Standardized Patient and Assessment Center, also known as S-PAC, that contains fully equipped rooms for patient exams. “Carol was very interested in using her gift to develop new educational initiatives,” he says. “I am working to move things in that direction.”

Sirot’s gift inspired the university to name the center after the Sirots and a sign at its entrance reads: "Standardized Patient & Assessment Center: A Gift of the Family of Gustave & Carol L. Sirot.”

In addition, her gift will support research on the topic by faculty and students and a speaker series with health care experts from outside the university. “We need to keep up to date on what is cutting edge with chronic fatigue syndrome,” says Hartmann.

Sirot says the most difficult part of dealing with CFS is the enduring pain. “A lot of people don’t realize that CFS has a big inflammation component,” she says. “My pain is mainly a combination of three different inflammations: bursitis, arthritis and sacroiliitis. But really, there isn’t a part of my body that isn’t painful.”

Sirot does various things to relieve her symptoms, including icing her glutes and modifying her diet. She avoids pain medications because she feels, “If it is strong enough to help you, it’s strong enough to hurt you.” She also maintains a positive attitude. “It’s not what happens in life,” she says. “It’s how you feel about what happens.”

In fact, Sirot rarely tells people about her CFS. “It’s not the kind of thing people enjoy hearing about,” she notes, adding that she struggled with what to write about her life in a book created for her 50th college reunion. “Finally, all I did was put in one line that said: ‘My body has become unreliable.’ I didn’t want it to be a downer.”

Despite her lifelong health battles, Sirot, a mother of two and a grandmother, has lived a vibrant and productive life. She studied art at Smith College before moving on to a teaching fellowship at Oberlin College. Today, her modern Guilford, Connecticut, home, with views of Long Island Sound, is filled with her colorful paintings and geometric sculptures. Serving as the past president of the New Haven Wine and Food Society was just one of the many ways she has been involved in the local community.

Philanthropy has long been important to Sirot, who several years ago established the Carol L. Sirot Foundation. “I love being able to help people,” she says. “This illness has a profound effect on your life. So, in recent years I decided that I was going to make it part of my legacy to help other people who suffer with it, too.”